It begins for me, tomorrow.
I go into the hospital and begin my pre-surgery preparation. I will be in the hospital for 5 days, though I only need to stay overnight for 2 days.
What is ViaCyte? ViaCyte is a company out of San Diego. Their business is stem cell research technology. This particular trial is to determine if their plastic encapsulation device for housing stem cells, will be effective in creating beta cells for the production of insulin, in people living with Type 1 Diabetes.
You can read about the trial at this link.
The trial period is for 2 years. During which, I will be taking a large course of immune suppressing drugs. The drugs are not due to potential rejection of the stem cells, the drugs are to suppress the body’s immune response to forming scar tissue around the plastic encapsulation device. This happened in previous research trials whereby the subjects were given the implants without taking the drugs; 100% of the subjects formed scar tissue around the implants and crushed them before the cells could vascularize and differentiate into insulin producing cells.
How did I get selected for the trial? I was having a healthy rant about blood sugar management with my endocrinologist, and she referred me to the trial’s principal investigator. I spent the majority of the Fall of 2018 doing what I needed to, in order to meet all of the inclusion criteria (see the Clinical Trials government link above). Once I met that criteria, I waited for a phone call from the study coordinator, which happened in February. I had to go through further evaluation, after which, I was still deemed eligible. Hooray!
Now, it was all up to me. I was given the green lights from everyone, the research team, and from my work. Did I want to go through with it? What’s the worst that could happen? I had to ask myself some deep philosophical questions:
“How will I feel if the trial is not successful? What if I don’t produce enough insulin to stop taking insulin exogenously? What if the implants work and then stop working, for some reason?”
I asked my endocrinologist, who had spoken with some of the subjects from the Edmonton Protocol – research done in the early 2000s, which comprised of islet cell transplantation, cells harvested from three cadavers to have enough for one person! She told me “Even though they only produced insulin for a short time, they were all happy to have a ‘vacation’. None of them regretted their decision.”
This was significant for me, as I’ve been taking exogenous insulin since I was 5 years old. I was concerned that I would be overwhelmed with the freedom of not having to take insulin, that to have that freedom taken away from me – would that be worse than being stuck in the dark? I don’t exactly recall any memories of a life without diabetes. Except for my birthday cake when I was 4 years old, and eating that sickly sweet green-coloured cake icing. Pretty sure I was happier to see the little plastic zebra decoration than I was to eat the cake!
Another thing that I was told to stop doing, was that I would have to quit obstacle course racing, at least for the period of the trial. At first, I was devastated. I had been competing in this sport for the past 2.5 years and it brought me so much joy, in exercise and in the community. However, toward the end of my season last year, I had a lot of really difficult races which were more suffering than gratification. I managed to conquer one of my nemeses: I finally nailed the monkey bars in a few Spartan Races in Calgary and one Tough Mudder in Whistler. However, the terrain variability and my continued frustration with some of the other obstacles helped me to feel like perhaps, some time off from the world of OCR would save my sanity.
When I was first told to stop doing OCR, the PI doctor told me the only exercise I could do was walking. I was horrified, but I did as I was told and did nothing but walk and play Pokemon GO for 6 months, to keep myself from going stir-crazy. When I got a chance to speak with the study coordinator though, she helped set me straight. They wanted me to avoid doing OCR because they didn’t want me to land on my abdomen and damage the implants. It’s also the first 3 months post-surgery that are the most “tender” – if there is a time that I need to avoid landing on my abdomen or twisting my torso (e.g. like in swimming), it’s in that time period. I asked the study coordinator and the surgeon if it was fine for me to swim, in a few months. I asked if it was okay for me to train for on-road and off-road triathlon (I’ve had my eye on XTerra Races for quite some time!), and they said it was fine.
Lucky for the study, if I get a chance to do any type of triathlon this year, it likely won’t be until the Vancouver Triathlon on 02 Sep. I have to take swim lessons, then I need to acquire a wetsuit and practice open water swimming. I have a road bike and road runners, but I need to take mountain biking lessons and acquire new trail runners. This means my race card has dropped down to one event; in 2018, I completed eleven obstacle course races, and one trail race.
If you ask me how I truly felt about racing though, or how I feel about athletics in general, you would hear me rant for days about how much it sucks to manage type 1 diabetes during an event. Many people applauded me when they learned of what I had to deal with, which I think is completely stupid. There isn’t exactly a choice in this matter. It’s shit to deal with, whether I’m living a sedentary life or an active life. Living an active life is WAY more fun, and gives me a much bigger quality of life than if I wasn’t active, even with the added stress of diabetes. To let oneself succumb to a chronic illness in preventing them from living the life they want for themselves is silly. Of course, I recognize that a lot of other things in my life allow me the privilege to engage in these events at all: having a stable career, having a stable home life, having an extended health plan to cover my diabetes management devices. This is why I am doing this at age 36 and could not do it at age 26. I was not long into my university degree and was just starting to become brave enough to exercise consistently.
Once tomorrow happens, I won’t be permitted to publicly discuss what’s happening to me during the trial. Just like my anonymity is maintained within the trial, I cannot discuss my outcome or the outcome of the trial itself, until the study is completed.
All I can say is that if, for any reason, I wanted out of the trial before the 2 years are up, I’m allowed to drop out. No questions asked. The worst possible scenario? I’m returned to the life I am currently living. Which isn’t so bad…I’ve taken my life a long way over this short period of time!